May 7th 2008

When you don’t want to go

Posted in Helen & Warren, Izzy, Lenore

The Hound of Love reflects on the foibles of humanity

May 7, 2008 – It was sometimes difficult, occasionally painful, but I always wanted to go see most of the Hospice patients I’ve been assigned to. I generally like them, and the people around them. I have been confronted lately with a patient on the other end of the spectrum, one I do not want to go visit. There are no poems or sweet memories, no laughter or warm moments on these visits, no people much to like or talk to. Honestly, I don’t think I like him very much.
If Warren and  Helen’s life sometimes seemed like a sweet love story, the home Izzy and I went to late today was nothing like a fairy tale. It was our sixth visit, and I have struggled with every one of them.
The patient is a man in his 50′s almost totally disabled by chronic degenerative disease, who sits alone in a corner of house, empty, but for him and private nurses.
He cannot move, cannot speak. The family will not permit photos of him, which is fine, but a relative told me the reason was because they didn’t want anyone to see him, because he “used to look human.” This comment was made in front of the man, whose eyes told me – he can’t speak much – that he heard every word. Unlike many of the other patients, I am not drawn to him, or of what I could see and glean of his life.
He loves animals and Izzy and Lenore have both visited with him, to his evident pleasure. The nurses are efficient, and he is well cared for, but there is little regard for his dignity, and we often see things that are uncomfortable, for me, and, I am sure, for him. I guess I don’t much like his nurses either, also unusual for me. Mostly, we feel very welcome when we visit. In this house, I often don’t.
A number of other things have bothered me about this house. This patient is, in fact, disfigured, and difficult to be around for other reasons. I thought of the beautiful meticulously cared for people I often see, and then remembered that it isn’t always like that, and aren’t the others in particular need?
This is a different experience with death than I usually see, but he has chosen to be where he is, and that is his decision, and his family’s not mine.
I was so bothered by these visits that I told Keith Mann, the Volunteer Coordinator, that this was the first Hospice patient I’d been assigned to that I didn’t want to visit.
I guess I had expected him to tell me not to bother, although I should have known better.
“Those are sometimes the ones you really need to go see,” he responded. I thought a lot about that and understood what Keith meant.
So recently, I left Lenore home and piled Izzy in the car and we went to see this man, in this spooky house and difficult environment, and I took a deep breath and rang the doorbell and shuddered, and reasoned that it doesn’t matter what I do or don’t like, these visits are about offering comfort and support to someone approaching the end of his or her life.
If it matters whether I am comfortable, then the visits are about me, not them. An easy trap to fall into, but not the point of the work.
It was also true that the visits with Warren and Helen were so powerful, and yielded many rich things – poems, photos, conversation, love – that I needed to turn my head around and get back into the real world of Hospice, which is sometimes loving and warm, sometimes painful and disturbing. This man’s passage is painful and disturbing. Is my responsibility any different?
So Izzy and I stormed the house like Marines heading for a beach. I brought photos of the farm, a couple of flowers plucked from my garden, a short story to read and the Soul Dog. We swept into his room, past the clucking nurse, propped up a photo of the goats, and saw him smile. Then I read him a short sports story – he is a football fan – and he nodded and grinned.
Then I called Izzy up onto his bed, and Izzy slithered up alongside of him, and put his head on the man’s shoulder. The grin was wide, and he nodded enthusiastically, more relaxed and at ease than I had ever seen him.
A half hour we left, promising to come back in a few days. I called Keith and said, “hey, you were right about this visit. These are ones you need to make.”
It might be the most important Hospice visit I’ve made.